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Frank Ferraro remembers his pinky tingling in 2000, a sensation he shrugged off at the time, calling it a “pinched nerve.”
But by 2003, during a test in front of his neurologist, Ferraro couldn’t even sign his name. The failed exam revealed much more than a pinched nerve.
Today, Ferraro’s left hand trembles uncontrollably, while his right barely moves at all. The muscles in his face are cemented in a stoic expression, and his erratic gait does just well enough to keep him from falling flat on his face.
At age 46, Ferraro has Parkinson’s disease, an unrelenting degenerative motor-system disorder, the cause of which, and cure, remains a mystery.
And now, three years after being diagnosed with Parkinson’s — a disease he says he plays “tug of war” with — Ferraro is playing the same game against Social Security, with an expected outcome just as gloomy.
Parkinson’s disease usually begins between the ages of 50 and 65. It affects about 1.5 million people nationwide, and between 8,000 and 10,000 people in Western Pennsylvania, according to Kevin Brown, executive director of the Parkinson Chapter of Greater Pittsburgh.
Ferraro, of Edgewood, suffers from young-onset Parkinson’s, a designation given to sufferers younger than 50, which represents less than 15 percent of people with Parkinson’s in the U.S. Actor Michael J. Fox was diagnosed with young-onset Parkinson’s in 1991 at age 30.
Common symptoms of Parkinson’s include muscle stiffness, tremors in the arms and legs, difficulty walking and fatigue.
Such symptoms have been mounting for Ferraro since 2000. The former newspaper printer, computer-aided drafter and self-employed artist tried his best to disguise them, and he waited as long as he could before he finally filed for Social Security in July 2007.
“The last thing I wanted to do was file for disability,” he says softly, struggling to raise his voice, another symptom of Parkinson’s. “But I had to because I couldn’t function anymore. The disease made me stop.
“I’ve been told, ‘You’re too young to have Parkinson’s,'” Ferraro adds.
That belief could explain why some Parkinson’s sufferers in the region, who, after being forced to surrender their livelihoods during the prime of their professional careers, must fight Social Security to collect disability.
In fact, some are finding the government to be just as unforgiving as the disease.
According to David VonHofen, director of programs and outreach for Parkinson Chapter of Greater Pittsburgh, young-onset sufferers like Ferraro are hit hardest when denied disability.
Unlike older workers who file claims for disability benefits, “They’re hitting their peak earning years,” VonHofen says. “And all of the sudden their careers are taken away.”
VonHofen says the major difference between young-onset sufferers and older people with Parkinson’s has less to do with symptoms and more to do with the unusual nature of being diagnosed with the disease at such a young age.
Until he met with the young-onset Parkinson’s group, a division of the Parkinson Chapter of Greater Pittsburgh, Ferraro had no idea how difficult his battle for disability benefits would be.
“I told [the young-onset support group] I was applying for disability, and they all kind of laughed and told me their horror stories,” he says. “How it can take years and you can still be denied.”
According to Mark Lassiter, of the Social Security Administration national press office, 75 percent of people with Parkinson’s who applied for disability in 2006 were accepted on their first try, a surprising statistic to Ferraro and other young Parkinson’s sufferers in the area who are struggling to receive Social Security.
Lassiter wrote in an e-mail to City Paper that he was not sure whether the SSA had statistics showing the acceptance rate for Parkinson’s sufferers less than 50 year old. The SSA could not produce such specific statistics by CP‘s press time, and no representative would return phone calls or e-mails asking whether the acceptance rate for young-onset Parkinson’s sufferers is generally lower than the overall rate.
Carolyn Woodberry, development associate for the National Parkinson Foundation, says the 75 percent acceptance rate makes sense for older Parkinson’s patients, but “those young-onsets, that’s a different situation.” She says young-onset sufferers are less likely to have their disability applications accepted, because many people tend not to think that younger sufferers can have the disease.
Larry Kemp, a Parkinson’s sufferer and attorney, understands the process of filing for disability, and he says the odds are against people diagnosed with young-onset Parkinson’s.
“Young people, according to the [SSA] guidelines, should have a harder time getting disability,” he says. If you’re older, “There is less of a burden to prove that you need disability. Favoritism is built into the system.”
Sandi Harr knows she isn’t a favorite.
Harr, 52, of Philipsburg, was officially diagnosed with young-onset Parkinson’s in February 2005. After her diagnosis, she kept a journal of all her symptoms, preparing for the inevitable disability application, which Harr filed in April 2006. She was denied five months later.
After applying, Harr says a disability examiner, the person in charge of accepting or denying applicant claims, never once met with her, something Harr found “very demeaning.”
But Majewski says that the Social Security office gathers all the information needed to conduct a thorough review of each application without meeting with the applicant. Social Security examiners consult with the applicant’s own doctors, who should be included in the paperwork, he says.
If the examiner still does not feel confident in accepting or denying the claim after discussing the applicant’s condition with his/her doctors, the examiner may ask the applicant if it is OK for the Social Security office to conduct a consultative exam, where an internal doctor reviews the case and assists in making the decision.
Harr, however, got the impression that the Social Security office paid little attention to the specifics of her problem and how it affected her work.
“They don’t want to know the details,” she says. “They are looking at a standardized format for Social Security.”
According to the Social Security Web site’s Neurological Disability Evaluation, applicants suffering from Parkinson’s can be accepted for disability if they have one or more of the following signs: significant rigidity; bradykinesia, an extreme slowness of movement; or tremors in two extremities.
“We look at their condition and its impact on their ability to function,” Lassiter stated in an e-mail to City Paper. “We also look at the effect of any medications they are taking for controlling their symptoms.”
But Harr isn’t convinced that Social Security reviews applications so thoroughly.
“It’s just a form they go by,” she says. “It’s not like you’re a person, you’re a process to them. It’s frustrating because your life is in the hands of people who are strangers to you.”
Although denied in her initial Social Security application, Harr, who worked as a home-care nurse for the University of Pittsburgh Medical Center, was fortunate enough to have short-term and long-term health disability benefits.
“It is a gift from God,” she says. “We would have been in financial chaos if not for the long-term disability.”
But knowing that her private insurance disability wouldn’t last forever, Harr re-applied for Social Security in September 2006. And this time she got a lawyer.
On Aug. 16, 2007, Harr and her lawyer had a hearing before a Johnstown judge, where she says she answered “vague” questions about her Parkinson’s. She left the hearing feeling “very deflated and dejected,” expecting her application to be denied once again.
But much to Harr’s surprise, it was approved on Aug. 27, 2006.
“I cried, partly out of relief and partly because the reality had set in that I was going to be on disability,” says Harr, beginning to cry. “It’s still really hard. There is a shame about it.”
Private insurance companies, like Harr’s, are obligated to cover workers who are unable to perform tasks required by their profession. Social Security is different.
Social Security can deny applicants disability if there is evidence that the applicant can perform any job, whether or not it pays as well, or is in their field of expertise. That is disappointing news to Thomas Forbes, who has worked as a carpenter for 30 years.
Forbes was diagnosed with Parkinson’s in 2005. He filed for disability in May 2006, and was denied eight months later.
“They said I can’t [do carpentry work] anymore, but I could probably do something else,” he says.
Age, Kemp says, probably plays a large part in the SSA’s decision-making process. “It’s harder for someone who is older to re-train for another career, rather than someone who is younger.”
Forbes, 53, of Zelienople, appealed the decision immediately after finding out he had been denied, but he was told by a representative of Social Security that it would take about a year and a half before he would finally stand before a judge.
“From what I’ve heard, it’s fairly typical,” he says. “This process takes a long time. I heard you always get turned down the first time.”
According to Kemp, Forbes is right.
Kemp, 58, was diagnosed with early onset Parkinson’s in 1994. He has represented about 20 clients after they were denied disability for a particular ailment or disease, none of whom had Parkinson’s.
“The office denied any person they could as long as they weren’t comatose,” Kemp says. “As long as they were able to walk into the Social Security office, they were denied.”
But, he says, upon appealing, “The judge usually always turns around the ruling.”
Since the symptoms of Parkinson’s can be subtle at times and escalate at others, Kemp says proving the need for disability can be difficult.
“It’s harder to explain why you can’t do what you used to be able to do,” he says.
Forbes says quitting his job and being denied disability hasn’t been a financial strain on his family. “My wife works, so we’re all right economically,” he says. “But if I were single, I’d be screwed.”
Although Ferraro isn’t single, he’s feeling the financial stress from being unemployed by his Parkinson’s at such a young age. Currently, he is relying on money from his mother to get by, as he awaits a decision from the Social Security office.
“I’m saddened by the fact that people have to go through such pain to get money that is rightfully theirs,” says Ferraro, who expects to hear in November if his disability claim is accepted. “You have to fight the government. It’s a battle I’m not looking forward to.”
This article appears in Sep 20-26, 2007.
I am not surprised our SSA is so ignorant to the validity of Young onset Parkinson’s but I am outraged just the same.
We talk about awareness and finding a cure but we cannot ignore those who are so physically devastated by YOPD that they can no longer work and provide for themselves financially or their families. How can we educate the public to raise awareness and funds when our own government agency designed to assist us after our years in the work force does not even recognize that you do not have to be elderly to be physically unable to work.
I write this shortly after taking a handful of pills that I need just to start my day otherwise I would not be able to perform my job (which is not physically demanding). I spend a lot of time saying Focus on a Cure but we need to widen our Focus and also Focus on fighting for those who while waiting for that cure are being financially cut off by the SSA.
Conditions Worsen For Those Seeking Disability Benefits
Social Security Disability (SSDI), is an insurance plan administered by the Federal Government that is paid for by FICA Tax deductions out of American’s hard earned paychecks. There is a huge shameful scandal involving this program, that most Americans know nothing about unless they need to apply for this benefit themselves. It’s supposed to be a safety net for millions of disabled Americans, but because of current program problems, the process of getting SSDI benefits can cause devastating, irreversible harm to your health and financial wellbeing, and it affects every aspect of a claimant’s life. It often exacerbates/creates new health issues, and many lose all their financial resources, their homes, even their lives while waiting for help. If you don’t suffer from depression before applying for benefits, chances are you will, in fact many contemplate or attempt suicide. It seems that this program is currently structured to be very complicated, confusing, and with as many obstacles as possible, to discourage claimants, hoping they “give up or die” trying to get their benefits. I was very unaware of these problems until my first experience with the SSA. After almost dying, and continuing to battle several incurable diseases, I lost all my life savings/pension money, and will never be able to recover from the financial, physical and emotional devastation that was caused while filing for my own SSDI benefits. My “American Dream” quickly turned into the “American Nightmare” through no fault of my own, and my horror story can be found on my website “A Bump On The Head”:
http://www.frontiernet.net/~lindaf1/bump.html
Nationally as of August 2007, over 65% of disability cases were denied (58% NY State) at the initial stage of the disability claims process and it took over 84 days (102 days NY State) for claimants to receive the initial decision on their claim. There are about 540,000 pending initial claims, 125,000 pending reconsiderations, and 752,103 pending hearings (1,417,103 total pending cases) and out of that number, 154,841 are veterans. There even are cases of Veterans, rated 100% disabled by the VA, who get denied their SSDI benefits and end up living in poverty on the streets. Horrible treatment for those who protect and serve our country. In 2006 there were 2,134,088 new applications for SSDI benefits and as of August 2007, there have been 1,499,053 new claims. If a claimant appeals the initial decision, the national average time to process a hearings case is now 523 days (735 days for Buffalo NY OHA that processes majority of Rochester cases), and that processing time continues to increase. Out of 145 hearing offices nationwide, Buffalo ranks at #136 for the worst processing times for hearing cases. Nearly 300,000 hearings have already been pending over a year and there are only 1,096 Administrative law judges (ALJ’s) nationwide to hear all those cases. There is no data on the number of people who originally filed a Social Security Disability claim that have given up or died.
Other detrimental regulations come as a shock to this very fragile population. Under Federal law, there’s a five month benefit waiting period, and five months of back money withheld, which claimants will never see again. Studies have shown that most Americans have about two weeks of financial resources to live on. SSDI recipients must also wait another 24 months, in addition to the 5 month waiting period from disability date of eligibility (the date that SS determines that you were officially disabled) in order to qualify for Medicare benefits. Yet they expect a population who can no longer work to go without five months of pay and wait several months to several years to have their disability claims processed! According to Health Affairs – Health Affairs – MarketWatch: Illness And Injury As Contributors To Bankruptcy – Feb 2005: Disability causes nearly 50% of all mortgage foreclosures, and over half of all personal U.S. bankruptcies, affecting over 2 million people annually. This was attributable to illness or medical bills, and 15% of all homeowners who had taken out a second or third mortgage, cited medical expenses as a reason. In April 2006, Parade Magazine in an article called “Is The American Dream Still Possible?” – published the results of their survey of more than 2200 Americans who earned between $30,000 and $99,000 per year, most stating that they were in reasonably good health. 66% say they tend to live from paycheck to paycheck and nearly 83% say that there is not much money left to save after they have paid their bills. This article also states that “National statistics show the increasing pressures on middle-income Americans: The savings rate for Americans is the lowest it has been in 73 years and credit-card debt is at an all-time high, averaging $9,312 per household.” A National Investment Watch Survey done by AG Edwards in 2004 found that 72% of Americans don’t have enough savings to meet short-term emergencies.
In a March 2007 survey of NCSSMA (Field Office and Teleservice Center management) members in which over 2,000 responded, over 80.0% stated that their office waiting times for the public had increased in the past two years. About a third said that waiting times were significantly longer. In addition, about 80.0% of the respondents stated they did not have enough staff to keep their workloads current. A January 2007 Harris poll designed to evaluate the services provided by 13 federal agencies, the public rated SSA at the bottom of the list and it was the only agency that received an overall negative evaluation. At one time in the recent past SSA was viewed by the public as one of the best federal agencies in delivering service. Now after substantial staffing cuts, SSA is at the bottom of the public acceptance list.
Here are some other important staggering disability statistics
Nearly 1 in 2 (133 million) Americans live with a chronic condition.
20.6% of the population, about 54 million people, have some level of disability
9.9% (26 million people) had a severe disability
Note: The sources for these statistics and even more information is listed here:
http://www.mychronicillness.com/invisibleillness/statistics.htm
Almost 3 in 10 workers entering the work force today will become disabled before retiring.
SSA Fact Sheet 1/31/07
More than 80% of working Americans don’t have disability income insurance or aren’t covered adequately.
National Underwriter Magazine – May 2001
About 1 in 7 people can expect to be disabled for five years or more before retirement.
Commissioners Disability Table 1998 – Health Insurance Association of America – NY Times – Feb 2000
There were 24,100,000 (of that number 8,200,000 were off the job) disabling unintentional injuries in 2005
National Safety Council Injury Facts – 2007
A person suffers a disabling work injury every 9 seconds
National Safety Council Injury Facts – 2004
According to an insurance survey, conducted by the International Communications Research of Media, PA from Jan 10-14th 2007, on behalf of the National Association of Insurance Commissioners, researchers found 56% of U.S. workers would not be able pay their bills or meet expenses if they become disabled and unable to work. 71% of the 44% who had insurance, stated it was employer provided, so if they lose or change jobs they would no longer have disability coverage. The Social Security Administration says 20% of the U.S. population will actually become disabled for a year or more before age 65.
There seems to be a relationship, between SSDI claims processing issues/backlogs, and the need for claimants to also apply for state funded Medicaid/Social Service programs. Many are forced to file for Medicaid, food stamps and cash assistance, another horrendous process. Those who file for these programs while waiting to get SSDI benefits, in many states, have to pay back the state out of their meager benefit checks once approved. As a result they’re often kept below the poverty level, almost never able to better themselves since they can’t work, and now are forced to rely on both state and federally funded programs instead of just one of them. This practice should be eliminated.
SSDI is not welfare, a hand out, reward, golden parachute or jackpot by any means, and most people would be hard pressed to survive on it. Yet, often claimants are treated like criminals – viewed as frauds trying to scam the system, and that the SSA must “weed out” them out by making it as hard as possible to get benefits. The percentage of claims that in fact, aren’t legitimate is very miniscule. In 2007, the average monthly Social Security Disability Insurance (SSDI) benefit was only $979. Nobody in their right mind would want to go through this process, and end up living in poverty on top of their illnesses, if they could in fact work. In our country you’re required to have auto insurance in order to drive a car, you pay for health insurance, life insurance etc. If you filed a claim against any of these policies, after making your payments, and the company tried to deny you coverage when you had a legitimate claim, you would be doing whatever it took, even suing, to make them honor your policy. Yet the government is denying Americans their right to legitimate SSDI benefits everyday, and you should be outraged!
I want to see new legislation created to reform this program and I suggest that together the SSA and Congress immediately set up a task force made up of claimants who have actually gone through the SSDI system, that has major input and influence on the decision making process before any final decisions/changes/laws are instituted by the SSA Commissioner or members of Congress. This is absolutely necessary, since nobody knows better about the flaws in the system and possible solutions to those problems, then those who are forced to go through it and deal with the consequences when it does not function properly.
As if things are not already bad enough now, they are about to get even worse, as the SSA is facing budget problems and employee layoffs, just as the growing numbers of disabled/aging population needs their services more than ever. SSA Field Offices have lost over 2,500 positions since September 2005 and nearly 1,400 positions since September 2006. In 2007 SSA Field Offices are averaging about 850,000 visitors a week. Constituents visiting these local Field Offices continue to experience lengthy waiting times and the inability to obtain assistance via the telephone. Congress also needs to legislate that Social Security funds cannot be used for anything other than to pay out benefits and administer the program. It is urgent that you contact your Congressional representatives on this issue. Remember that disease and tragedy do not discriminate on the basis of age, sex or race. If you think this could not happen to you – you could be DEAD wrong!
In closing I alert you to the case of Dane Edwards from the Rochester area, who applied for Social Security Disability benefits in October 2006, because of terminal lung and brain cancer. When he’d call to check on the status of his claim he was told that he must wait like everyone else, and that he should stop calling to inquire about the status. He obviously didn’t have the luxury of time. Dane will no longer be calling and he never received his benefits. The last precious, few months of his life were spent in anger and frustration, fighting a system, which in the end failed him miserably. He was 53 years old when he died on February 13, 2007 – his SSDI disability claim still waiting for approval. Unfortunately I must report that stories like his are becoming more and more common.
Social Security Disability Coalition – Offering FREE information and support with a focus on reform of the Social Security Disability System: http://groups.msn.com/SocialSecurityDisabilityCoalition
Sign the Social Security Disability Reform Petition – Read the horror stories from all over the nation at: http://www.petitiononline.com/SSDC/petition.html
SS Disability Data for Pittsurgh area:
DDS processing times measure the average time from DDS receipt of the case to DDS clearance – it does not account for any time a case is in the FO or a quality review component. These measures include disability claims regardless if they are paper or electronic cases.
Fiscal Year Through Week Ending Jun 29, 2007 (Week 39)
National average processing time – 84.8 days
Pennsylvania average processing time – 88.7 days
Hearings pending per ALJ month ending 8/31/07
National pending per ALJ – 708.19
Pittsburgh pending per ALJ – 680.43
Hearing Office Average Processing Time Month Ending 8/31/07
Pittsburgh ranks 90 out of 142 hearing offices nationwide for worst hearing processing times with an average waiting time of 533 days to get a SSDI/SSI hearing in front of an ALJ
Source: Social Security Admistration Reports 9/07
I am a 44 uear old single female. I had contracted PD last September October. I had a frozen sholder that I thought was maybe linked to the shaking. It began on my left side. Now it’s in my whole body. I do not have all the symptoms that Frank Ferraro has. I can still work. I am a food and product demostrator at Costco. I can’t do anymore hot liquids, and I am not cooking all that much anymore on the job. How does someoe like me get ssd? I would love to know if I even qualify. Claire J.
Fantastic suggestions , I Appreciate the points . Does anyone know where my company can get ahold of a sample a form version to work with ?